Children's caregiving of HIV-infected parents accessing treatment in western Kenya: challenges and coping strategies

This article describes qualitative research carried out in rural western Kenya in a setting characterised by poverty and high HIV prevalence. It discusses the responsibilities and challenges that children face when becoming the primary caregiver to an HIV-infected parent enrolled in an antiretroviral therapy (ART) programme, and the coping strategies these children adopt to deal with hardship. The research draws attention to the difficulties and opportunities of strengthening home-based care services to facilitate better conditions for children to cope as caregivers. Ethnographic data was collected through a variety of qualitative research methods (in-depth interviews, focus group discussions, drama, diaries and participant observation) during five months of fieldwork in 2009. Informants included caregiving children (ages 6–16 years), HIV-infected parents, community members, school teachers, community health workers, NGO representatives, and other home-based-care stakeholders. The findings reveal that children may play a significant role in the daily healthcare of an HIV-infected parent enrolled in an ART programme. The main responsibilities of the children caring for parents on ART were intimate care and nursing, household duties, and income-generating activities. A number of social factors determine children’s ability to cope with these responsibilities, including the caregiving children’s access to nutritious food, social and emotional support, assistance from community health workers, and adequate healthcare knowledge. The level and consequences of the children’s caregiving activities as well as their ability to cope were heavily influenced by: 1) the dynamics of their parent’s health condition while on antiretroviral (ARV) medication, and 2) the context in which the child sought social and economic resources. There is an urgent need for home-based care services to look holistically at people’s needs and resources at the household level, and, in particular, to consider the hardships and coping strategies of children who live with a parent on ART.